Today Kenzie is 6 years old! I can't believe she is 6! Wow, how time flies!!
I still remember being in the hospital having my baby girl! What a joyous time! Although, it seems like yesterday we where in the hospital after she had her first seizure! On the 9th it will be 3 years we have been dealing with seizures. I can't believe it's been that long. It is hard for me to remember what life was like before seizures. I have to say Kenzie is doing really good! She hasn't had a seizure since Friday. She had 2 at school. So far so good. We are still on the edge though just waiting for her to have an atonic seizure. A week ago Saturday, she had a complex partial in the car which lasted 2 minutes. Then the next day on the way to church she had another cp which lasted just about 2minutes. It always seems like she starts having the big seizures right around her birthday, so we wait for the shoe to drop.
Kenzie seemed to have a good birthday! We went to Burke Lake Park with family and friends. Had cake and ice cream, then rode the train. She loves the train! She got lots of nice stuff from everyone! Then tonight we went to dinner and the waiters all sang happy birthday to her, while she had an ice cream sundae! Not a bad birthday! On Thursday I will bring cupcakes to school for her to celebrate with her class.
Kenzie loves school! She is doing so well! She has made new friends! We had to take her to school the other day after a dentist appointment and some of the kids came up to her hugging her and were so happy to see her! It makes my heart swell, when I see how much people love her! She is such a joy!
Corey & Ryan are doing well! Corey is playing fall baseball with his friend across the street. He really liking it. Ryan is still playing football. They just had their first lose of the season on Friday, it was sad, but I know they will come back even stronger!
I will try and post pictures of her bday party & some from the boys games here real soon! It's off the bed and ready to start the week!
October 4, 2009
September 8, 2009
Wow, it's been a while! Sorry about that! Things have been busy at our house (as usual). Kenzie has changed meds and up meds, so much has happened!
Kenzie started Banzel, a new seizure med on the market. She is now taking 400mg 2x daily and things are going really well. She is off Topamax completely and her Lamictal is 100mg 2x daily. We lowered her Lamictal back down to 75mg 2x daily. We were at the beach and she got a rash, it looked like hives. So we lowered her Lamictal, and the rash went away. Since we lowered her seizures increased (we were only have 5-10 atonic seizures a day) and her behavior was not good. So we upped the Lamictal back to 100mg and things are getting better.
Today, Kenzie started Kindergarten! She is going to a different elementary school than Ryan, but that is fine by me. We were hoping she would stay at her pre-school for kindergarten, but the county moved the program to another school. The teacher knows her from last year, she was the teacher who came into her class last year to observe the kids. So she knows her teacher. She rides the bus to and from school. She loved it today. When the bus pulled up, she go so excited! She goes all day and didn't get home today until 4:20. She didn't seem tired when she got off the bus and she is still going. I hope she stays this way all year! Needless to say she had a good first day, oh and NO seizures at school! She has had only 2 as of 6:15pm this evening!
Ryan is now in 4th grade! He had a good first day too. His best friend is in his class this year, so that made his year! His teacher's son played baseball with Corey a few years ago, so she already knew Ryan. It's good she has a kid in sports, so she can understand Ryan better. He his playing football now and loving it! He plays both offense and defense, the kids never comes off the field! So far they have had 4 (?) scrimmages and won all of them! The team looks really good this year! Oh, and of course Wayne is the defensive coach again! Ryan has had the same head coach for 3 years now. He really is a great coach! Wayne has recruited one of his friends and his cousin to coach as well. This is going to be a great season!!
Corey is now in 8th grade! Can you believe it!! I know I can't! It took all of me not to cry when he left for school today! I don't even want to think about next year!!! He had a great first day! He has a few of his friends on his 'team' and in some of his classes. Corey is not playing any sports right now, his basketball season will be starting in October. He wanted to play fall baseball, but decided not to because his friends that play weren't going to play this season, they are all playing football. I wish he would play football, but he wants to play next year when he is a freshman.
I have started working 3-4 days a week now. I work for a billing/collections agency. It's a small company and very flexible, which is good with the kids. I really love it! Works out really good right now with the kids in school, I even have a little time to myself before the kids get home from school!
Well, I think you all are caught up now! Until next time!!
May 9, 2009
I have posted some pictures of Kenzie riding on her horse Comet! She is a big girl now. She rides in a saddle and sometimes she will ride side saddle! She loves riding!
May 3, 2009
We had our appt with the neuro. We have up her Lamictal to 75mg in the am & 100mg in the pm. Topamax is the same. We haven't noticed any change in her seizures. She is still averaging 15 a day, atonic seizures only. I have to make the call to her neuro to give her an update on Kenzie. I'm sure we will up it 100mg both am & pm. Her neuro said that we would be at our max then and we would have to start looking at other drugs. We only have 2 other drugs to try and then we are looking at the ketogenic diet or VNS. We will see what happens.
Kenzie is still doing here therapeutic horseback riding and loving it!! She is starting to ride a horse now named Comet. Kenzie does so good with Comet and she is such a good horse. Kenzie rides in a saddle and hold the reins (sometimes). She sits up much better than she did before!
This is a link to a our story that was told by myself at the National Walk for Epilepsy:
http://epilepsyfoundation.ning.com/video/personal-story-29
At the walk they had a station for you to tell a little bit about your story. I hope you enjoy it!
We will be having her IEP for her placement for Kindergarten soon. I have no date yet, but we are still praying she stays at Keene Mill, the school she is at now. We are very happy with the principal and the staff is very much aware of all of Kenzie's 'stuff'.
Corey is doing really well on his baseball team. He had his first strike out of the season on Saturday. He was upset with himself, but he played such a great game and had already had a good at bat earlier in the game. I'm so proud of him! This season is HIS season, he is shinning!! He plays 3rd base and caught an awesome fly ball on Saturday! It's so great to see him do so well and truly enjoy himself!
Ryan is doing good too! He hasn't been doing as well as he usually does, but he is doing good. He says he would rather quit baseball & wrestle all year long. BUT, his team is undefeated this season!! His flag football team is undefeated as well! Maybe he's just bored with it. He honestly needs constant motion. When he's playing catcher he's all over it! Oh well, season will be over in about a month. Then it's time to prepare for football season, which pleases him! Such a funny kid!
That's about it for now! Till next time!!!
March 29, 2009
I am so happy to report that our family walked in the 3rd Annual National Walk for Epilepsy yesterday. It was raining, but not as cold as I had expected, so I am thankful for that. We got downtown in enough time to get our Starbucks and see some of the tents they had set up before the Walk. It was a great day! Our team raised $2,490! We had 24 people in total walk! Next year, I hope to double the money raised and the people walking with us! Kenzie did great, she rode in her stroller the entire walk. Last year Wayne had to carry her on his shoulders. She had so much fun with all the people there. Our team got a picture with Alan Faneca, from the New York Jets. He has had Epilepsy since he was 15. Here is a link for his story on the Epilepsy Foundation website:
http://www.epilepsyfoundation.org/epilepsyUSA/faneca.cfm
He is a true inspiration and a supper nice guy! After the walk we all went and had lunch. All in all it was a great day!! I will upload the photos as soon as I can!
Kenzie is doing ok. She had a total of 25 seizures yesterday, but I guess that was because she got up early and it was a long day. She is averaging about 15 seizures a day still. We have an appt with her Neuro on Monday the 6th. Her behavior has not been all that fun. She is moody and angry a lot lately. I think it has a lot to do with the meds. Another issue for the Neuro on the 6th.
The boys are doing well. Corey got on the baseball team he wanted to get on! He is so excited about that. I think he will have a GREAT season!! Ryan got on the team he wanted as well and is doing well! His flag football team is rocking! The are 2-0 now! So cool!
I will blog after Kenzie's appt, hopefully with so much more info!
March 15, 2009
I offically have a teenager! Corey turned 13 on Monday! WOW! He has baseball tryouts next Sunday, it was today, but got rained out. Ryan has started his practice for baseball and flag football! Crazy I know, but I am confident that we can handle (Ryan too) 2 sports at the same time!
Kenzie is doing good! She is still having atonic seizures and now is having myoclonic seizures. We are averaging about 10 a day between the 2 types of seizures. It honestly seems to be a pattern, this is how it all started last year. She started having atonic seizures in late January and started the myoclonic in February, March. Hopefully, with her being on different meds than last year and with us upping the meds gradually maybe we can stop the pattern, before we hit the tonic-clonics.
She will start her second session of therapeutic horse back riding this Thursday. She loves it! She is doing so well! Kenzie knows when we make the turn from the main road to the stables, she starts 'calling' her horse and smacking her leg! When Dixie comes out into the ring and the helper comes to bring her to Dixie she starts 'running' to her. It's really great to see her so excited about this. I thinks it's really helping her. She tries to communicate more with us, and makes a lot of little noises.
We went to her re-eval and she has been given a label. The label for her now is OHI, Other Health Impairment and MR, Mental Retard. It was really hard to hear MR. I know it doesn't change anything, she is the same little princess we all love, but for someone saying your child is MR, is a tough pill to swallow. According to the social worker at her school this will get her more services through the state and more options for schools too! I don't think she will go to our home school, I am hoping she will go to the same school she is at now. They already know her and love her, even the principal is under her spell! But, she will obviously be in a different classroom. We will be able to visit the schools with MR programs before we comment to anything. Although, that will not be til the end of the school year. I'm just a little nervous about the change for her.
March 28th is the 3rd annual National Walk for Epilepsy! I hope all of you will join us in the walk! Go to www.walkforepilepsy.org, search for Team New Hope! If you can't walk, please consider supporting us!
Epilepsy Facts:
Over 3 million Americans have Epilepsy
200,000 new cases are diagnosed each year
45,000 of children under the age of 15 are diagnosed with Epilepsy each year
In 70% of new cases no cause is apparent
February 2, 2009
Things are crazy around here as usual! Kenzie is doing really great! She has started her horseback riding and she loves it! Her horse's name is Dixie. She is a beautiful white pony. Kenzie will say 'whoa' and is trying to say 'walk on'. She will ride her horse around the ring and wave to us as she goes by. Kenzie is really enjoying herself! I'm so happy it's working out for her. At first she was very apprehensive. She started crying and was a scared. But the woman who was helping was very gentle and great with Kenzie. When she put Kenzie on Dixie, Kenzie kicked Dixie and the horse didn't even move! I knew then we had a great horse! Her evaluation went very well and so she will ride for 8 weeks this winter. If she continues to do well and we are interested then we will sign up for 8 weeks in the spring. Every time when Kenzie sees a horse on tv she gets excited and will make a 'horse noise'!
We have a re-evaluation coming up for Kenzie tomorrow at school. The school has tested her to see if she will still meet the requirements for services through Fairfax County for the coming school year. This is something they do every 3 years. This is our big one though! Her teachers, the county psychologist and social worker along with her OT and Speech therapist will be the ones making that decision. Kenzie will also get a label. The label she has had for 3 years now is DD (Developmental Delay) is only valid for Child Find children. Once the child starts kindergarten she must have a label more specific than DD. I know she will qualify for services, I'm just nervous about the whole label thing. I know a label will only help her and not change her, she will always be Mackenzie! So if I just ask for prayers!
Ryan has been doing really well with his wrestling! He has placed 1st 3 times and 2nd 2 times! We are so proud! They are really long days, but we all enjoy them! We have had several of our friends come to see him wrestle, it's been fun this season!!
Corey has been doing really well with basketball. Although, his team has yet to win a game, Corey is playing really well! We are so proud of him, he has come so far from the summer!
We have also signed both the boys up for baseball already! Planning for spring, WOW! Corey will be playing Babe Ruth, which is with the bigger kids now! I can't believe he will be 13 in March! Ryan will still be with WSLL (West Springfield Little League), but there a few Majors coaches looking at him this season! Majors is the highest you can go in WSLL, it's not so common for 9 year old kids to play majors! Plus, Ryan is a catcher which is huge thing too! (So they tell me!)
School is going really good for all the kids as well!! We are very blessed!
Don't forget to join us for the 3rd annual National Walk for Epilepsy in DC on March 28th! We have a lot to be thankful for this walk! Kenzie has been seizure free for over 4 months now!! So join us in walking and raising money for a cure for the tragic disorder!!
January 4, 2009
My first entry for the new year!! I'm so excited to report that Kenzie is doing GREAT!!! We have reached 3 months of being seizure free!! How awesome is that ?!!!
Christmas Eve Kenzie woke up with an ear infection, so of course we had to take her to her pediatrician. He put her on antibiotics and ear drops. The next couple of days she was little cranky, but that was all! I can handle cranky. Christmas was great! The boys got a lot of cool things and Kenzie got a few baby dolls. But, I think her favorite is her new Elmo Live. It's such a cool toy, he tells stories and plays games. Very interactive. Corey got a dell laptop, from Grandma!! WOW! I'm jealous! Ryan got a few jerseys. It was a great Christmas! We had dinner here with all of the family and some very close friends!
On Thursday Ryan will be 9 years old! I can't believe it! My kids are getting so big! Wrestling is going great for him. He got first place in his first tournament on December 13th!
Corey's first basketball game is on January 17th! He can't wait for the game to start!
Kenzie will start therapeutic horseback riding lessons on Thursday! We are so excited, I think it will really benefit her! Although, in October we went to Cox's Farm and they had some horses. She was terrified! She loved horses a few months earlier, not sure what happen there! So I am hoping she will return to her love of horses! We will see!!!
Well, I think that is it! Things are really going well on the medical front here! We are so blessed! We have so much to be thankful for!
Don't forget to sign up with Team New Hope for the 3rd Annual National Walk for Epilepsy on March 28th in DC!! I hope to see you all there!
